It has been nearly three years since Brenda, 38, who does research and scheduling work for an engineering firm, and her husband, Reto, 39, a lineman for Sierra Pacific Power Company, first discovered an unusual constellation of bruises on their son's lower back. To his parents' horror, Dustin was diagnosed with a type of cancer known as ALL (acute lymphoblastic leukemia). Instantly they began a fight to keep him alive. "I remember sitting over his hospital bed, thinking we had lost him," says Brenda, who cries as she recalls those first critical days when Dustin's illness and the ferocious drugs used to treat it made a battleground of the boy's body.
Instead, after 33 months of chemotherapy plus dozens of trips to hospitals and specialists, Dustin's cancer is now in remission and doctors are hopeful that he will one day be cured. But just as the Grosses were winning their war against cancer, other families in the area were waging struggles of their own. Since Dustin was diagnosed on April 17, 1999, 12 other young people from Fallon (pop. 8,300) and surrounding Churchill County have been diagnosed with ALL, more than 20 times the national average. Another child has AML, acute myelogenous leukemia, which has a lower survival rate. Two of the children have died; 11 of the other victims, including Dustin, are in remission.
The people of Fallon, a placid farming community in the Nevada high desert, now find themselves at the epicenter of what scientists have conclusively identified as a cancer cluster—a rare and unexplained outbreak of disease among otherwise healthy kids grouped by place and time. Ken Tedford Jr., the town's mayor, recalls the creeping horror that settled over the region 65 miles east of Reno as the devastating and eventually deadly cluster took hold. "First there was denial: 'This is not happening,' " says Tedford, 48, a father of four young children, none of whom has contracted the disease. "Then there was anger, and finally acceptance: 'Okay, how are we going to deal with this?' "
At first the multiple diagnoses seemed like nothing more than a grim coincidence. Barbara de Braga, an oncology nurse at Churchill Community Hospital, became suspicious when the number of young leukemia patients spiked in the spring of 2000. "Back then we had one [chemotherapy] infusion room, so the parents were bumping into each other," she recalls. After the fifth child from Fallon became sick, she alerted the hospital administration and called her sister-in-law Marcia de Braga, who represents the region in the Nevada state legislature. Marcia notified state health authorities, and the investigation began. Early the next year Dr. Thomas Sinks, an epidemiologist with the Centers for Disease Control in Atlanta, visited the town and delivered a somber warning. "He said, 'You need to prepare for more cases,' " recalls Mayor Tedford.
Eventually Washington began to take notice too. "When little kids are sick and you see them with no hair and their faces bloated with chemotherapy, you see how serious the problem is," says U.S. Sen. Harry Reid, a Nevada Democrat who held hearings in Fallon last April with New York Democrat Sen. Hillary Rodham Clinton, his colleague on the Senate Environment and Public Works Committee. (Reid has proposed a national database to help detect other clusters.) Last August investigators began combing the area to check for radon and possible leakage from a jet-fuel pipeline that runs beneath the town to nearby Fallon Naval Air Station.
Meanwhile researchers from the CDC are questioning victims and their families about the smallest details of their lives. "This is probably the most intensive investigation of a cancer cluster ever done in the United States," says the state's chief medical officer, Dr. Mary Guinan, who estimates that more than 100 researchers have so far joined the multimillion-dollar probe.
Earlier this year, before testing had even begun, a state panel of experts expressed doubts that environmental contaminants such as the benzene found in jet fuel and naturally occurring arsenic in the town's drinking water were to blame for the Fallon outbreak. Both chemicals have been present for years, and neither has been linked to the type of leukemia that has stricken most of the young victims. Acute lymphoblastic leukemia is generally considered to be among the most treatable forms of cancer. But the treatment itself, especially for young children, is a harsh regimen of toxic chemotherapy drugs that ravage the body and can cause organ damage, mental retardation or even death.
Fortunately for the families who have had to endure the wrenching ordeal, the people of Fallon have banded together. Fallon Families First, a charity organized earlier this year, has raised $150,000 and distributed roughly half of it to financially hurting families in the form of mortgage payments, money for groceries and Wal-Mart gift certificates. In one case the group provided the strapped family of a sick child with cash for bone-marrow testing on several relatives. A match was found, and the child may soon receive a marrow transplant.
Neighbors have washed laundry for the families, offered free rides and delivered home-cooked meals to those in need. "It was amazing to see how many people were waiting in line to help us," says Reto, whose friends held a fund-raiser at a local casino in 1999 that raised $6,100. Adds Brenda: "I walked around town saying, 'Thank you, thank you, thank you.' "
In light of all the support they have been shown, the Grosses are grateful they moved to Nevada from Manteca, Calif., 12 years ago. Reto had landed a job with Sierra Pacific Power, so he and Brenda set out for their new home with their three older children—Sierra, now 16, Amanda, 15, and Reto, 12—in tow. Dustin was born six years later. Boisterous and healthy, he rarely caused his parents any concern before the day in March 1999 when his daycare provider reported that he seemed unusually tired. "He was taking two-and three-hour naps," says Brenda. She soon spotted bruises on Dustin's back and what appeared to be dots of blood beneath his skin. Alarmed, the Grosses whisked Dustin to the emergency room of Churchill Community Hospital.
There, a blood test was ordered, and four hours later a doctor returned with the devastating results: Dustin had leukemia. Dr. James Hockenberry, 68, the family's physician, tried to be reassuring but left no doubt that Dustin was gravely ill. The boy was flown to Sacramento, home of the University of California Davis Medical Center, where doctors pumped a transfusion of fresh blood into his listless body. Meanwhile his parents began a crash course on ALL.
They learned that the disease is the most common form of cancer among young children, afflicting some 2,400 in the U.S. each year. ALL destroys the immune system by causing the body to produce millions of malfunctioning white blood cells while also blocking the production of red blood cells that carry oxygen throughout the body. Unlike other forms of leukemia, ALL has an expected survival rate of 80 percent.
Indeed, after an initial setback when Dustin reacted badly to the aggressive doses of chemotherapy and became so weak he could barely speak, his condition rapidly improved. His cancer went into remission after just 10 days of therapy. The Grosses returned to Fallon and converted one of the three bedrooms in their ranch house into an oncology ward for one, where Brenda would draw blood from her son to monitor his damaged immune system. Sierra learned to flush out the plastic catheter in his chest—which was implanted to make injections easier—and to administer his medication, as many as 33 pills a day. Dustin lost his hair and had to be hospitalized twice for pneumonia, but he held his own. So did his parents, who worked hard to hide their fear from the children. "We saw some nasty stuff at the hospital," says Reto. "The best thing is to keep going and think positive."
In the spring of 2000, just as the Grosses were coming to grips with their son's disease, Brenda ran into Richard Jernee, a truck driver from Fallon, at the Sacramento hospital. His son Adam was also being treated there for ALL. Tragically there would be no happy ending for the Jernees. After intense chemotherapy, bone-marrow transplants and radiation treatments, Adam died on June 3 at the age of 10. "As it was happening, I held his head in my hands and whispered over and over again that his daddy loved him," says Jernee, 34.
Among the mourners at Adam's memorial service in Fallon later that month was Tammi Beardsley, whose 6-year-old son Zachary—the ninth Fallon victim—had been diagnosed eight months earlier. As she wept through Jernee's eulogy, Beardsley, 41, felt a mixture of guilt that her son was surviving and panic that although he was responding well to treatment, there is never a guarantee of survival with cancer. "How does a mother say goodbye to her child?" she asks.
That sense of foreboding is a common feeling among families fighting the disease. Carinsa Rivers, 25, a part-time community college student, is still haunted by what her 4-year-old daughter Sereynah said two years ago as she struggled against hospital technicians who were trying to insert an IV line shortly after she was diagnosed with ALL. "She said, 'I don't want to get dead,' " recalls Rivers, at the time a single mother pregnant with her second child. Initially Rivers drew strength from weekly meetings of a support group organized by Brenda Gross. But after the meetings turned into a forum for complaints about the investigation, she stopped attending.
For most parents of children with ALL, the fact that scientists may never determine the cause of the cancer cluster is a source of deep frustration. Many are also exasperated by what they see as the investigators' hasty conclusion that contaminants—arsenic and benzene—probably did not cause the illnesses. "This is emotional," says the state of Nevada's Dr. Mary Guinan. "The families are disappointed that we can't provide answers."
Nevertheless researchers are exploring a third possible explanation for the sudden outbreak. Known as "population mixing," it is a complicated theory that suggests that newcomers to the rural region—personnel at the air base, for example—may have brought with them unfamiliar viruses or bacteria. By a process that scientists don't yet understand, the viruses and bacteria may have triggered a cancer-causing reaction among the children. Even scientists who support this theory acknowledge that it is unproven. "I don't think we understand exactly what's going on," says Dr. Thomas Sinks, the CDC epidemiologist.
While that may seem like an understatement to Fallon's citizenry, the band of families can at least take comfort from speculation that the cluster may soon run its course. With no new diagnoses since last May, experts are cautiously hopeful that the unknown factors that suddenly caused the outbreak may just as abruptly have disappeared. But the mystery remains. Says Tammi Beardsley, the mother of a 6-year-old survivor: "If this can happen to my child, who had a healthy head start in life, then it could happen to anybody."
Michael Haederle in Fallon
- Michael Haederle.
Clutching a flyswatter while perched atop a kitchen counter, 6-year-old Dustin Gross eyes a buzzing insect that has penetrated the airspace of his parents' home in Fallon, Nev. Before Dustin can launch himself into midair in pursuit of the winged intruder, Brenda Gross gently but firmly tells her son to climb down. She is not prepared to let him risk an accident, not after what he has been through.